Monday, June 14, 2010

Checking in Again

Having fun playing around with the new blog format : )

Gary is doing well! His energy is as always incredible. He looks pretty good. He complains about tummy pain but I think I may have an attention issue going on. He will say my tummy hurts so his Mommie will cover him in smooches. I love it! I am really pleased and feel at ease with where he is at right now. I can't imagine how I will feel when we are tapering off all these medications and still going strong. It will be like a fog lifting. He has some small signs that come and go. Like skin changes but overall, its good. We have a clinic appointment tomorrow at one to check-in. Then on Wednesday we have our IVIG infusion at 8:15am in the infusion center. So I will report after our visit.

Gary did well with the sun. I kept the 70 block on the best I could and did the traditional hat, jacket, cover it up. Seattle has not seen much sun yet this summer. In fact typing "summer" is confusing because it certainly doesn't feel like summer. We spent the weekend outdoors however for big brothers baseball games. It was a lot of fun. Gary did fall down and scrap a knee up. He is definitely less tolerable of the sun then your average kid. And that is from the disease and smear all the medications he takes to that sensitivity and I start fearing I am not being careful enough. One sunny day we had a couple weeks ago, I did call on my fellow JDM moms because it looked like Gary was about to blister his face was raw red. I had him covered, and blocked they whole day. But they talked me down and sure enough the next morning he looked just fine. Sure I begin to wonder if that exposure will activate the process of the disease, muscle weakness, skin rash, ect,.

My good friends on facebook have been enjoying the fact I shared a little movie trivia with all. My children watched the new version that is out, "Alice in Wonderland" with their Auntie and Uncle. Well, they kindly informed me that they both agreed that I was the Red Queen and my sister were the White Queens. So I YouTubed the Red Queen. I have only one comment, "Off With Your Head!!!" : )

Oh bother, I'm a gentle flower petal. Well, until you walk in dump your backpack at my feet and slip your shoes off without putting them by the door in the basket. OFF WITH YOUR HEAD

1 comment:

I am glad Gary is doing better! He is always in my prayers :0) Good luck on infusion of Wed. My new med seems to be doing something knock on wood....they are tapering my steroids to see and so far so good!

I feel ya with the sun, I finally talked the hubs and family into me going to the water park with Kelcee and Friends and I didn't go until after 1:30 since the whole sun 10-2 thing and I lathered in SPF 50 and I couldn't get one part of my back and um well it did get burned, I was so scared it was gonna cause major blisters, flare up etc., it is almost gone now but I still worry and I was only out in the sun for like 2 hrs....but like you said the combo of the disease and the meds uggggggg

I laughed right out loud at your kiddos referring you to the red queen and your response "Off with your head"

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